Part 1 of a journey into ADHD: the diagnosis

“From the outside my eldest son looks like any other 8 year old boy. What you cannot see are the labels that have been attached to him: Disabled. Special Needs. Autistic.” Over a series of three posts Rachel will be sharing an unflinching journey into ADHD.

At four and a half years old, Jake was diagnosed with having Severe Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), as well as having traits of High Functioning Asperger Syndrome. I dislike the fact that my child is labelled and will be labelled for the rest of his life. But fact of the matter is that without these labels, he (and us as a family) cannot get the help that is needed.

I’m often asked about Jake and how he got his diagnosis. What were the signs? How did we know something wasn’t right? Truth is, I really don’t know. Call it Mothers instinct if you will. I just knew that he wasn’t like a ‘normal’ child.

He was born naturally, 8 days late and weighing a healthy 7lbs 5oz. He came out screaming and didn’t really stop. Being our first born we didn’t know any better. He had colic, and then developed reflux. He had to be held a certain way to go to sleep. I had to teach relatives the technique when I went back to work.

He hit all his milestones pretty much as they were expected. He learnt to crawl and climb. He was pretty much climbing things before he could walk. He became inquisitive and you had to put everything up out of the way. It was only when we had our second child that we realised how hard we had had it with Jake.

Kyla was an easy going baby, laid back. She spent most of her time in the travel cot otherwise Jake would be climbing on her and bouncing her in the bouncer just that little bit too hard. We all put it down to change in circumstances for the best part of a year as a lot went on. His sister arrived when he was just 17 months old. Aged 2 he went to nursery for a few hours a week.

Then when he was 2 and a half we lost his Great Granddad who he was very close to. Jake’s behaviour became uncontrollable. He came across as being rude and arrogant and would often annoy people whilst out. At home he started lashing out and being aggressive, as well as very hyperactive. He would never sleep. We had Health Visitors come round and offer advice, which was followed but never worked.

We took him to a GP and the GP started explaining about his nephew who was diagnosed ADHD and it was exactly the same as Jake. We were told to change his diet, cut out E-numbers etc (although he didn’t have these too often anyway) and see how things went over the summer. We changed everything. We cut out all sweets, checked foods for e-numbers, allowed him only water in case there was something in the squash – and yet it did nothing. We returned back to the GP in the September when Jake had just turned 4. We pleaded to be referred to someone. Just to assess him. If it turns out to be nothing, at least we know. They eventually agreed and a referral was made.

I got an appointment through to see the Child and Adolescent Mental Health Service (CAMHS). I thought it was slightly odd to see them, but didn’t query it and went to the appointment. As soon as I started explaining about Jake, I was told that it wasn’t Mental Health issues but Behavioural and he needed to see a Paediatrician. I was advised to go back to my GP and get the correct referral made. I felt really disheartened. I thought I was finally going to get the help we needed; instead I was just passed backwards. I went back to the GP and was referred again – this time to the correct team.

We were seen by the Paediatrics Team in February 2010. We discussed Jake, his behaviour etc and what we had already done about it. We were given a questionnaire called a Connors Test to complete, and one for his Nursery to complete. They were then to be sealed and the results would be compared at his next appointment in May. The form itself asks about the child’s behaviour, how they are like towards siblings, peers, other children etc. How they are around the home, can they sit still and how is their concentration. There are a lot of different questions to be answered on a scale.

When we went for the appointment in May, we were not expecting the outcome we got. We just wanted a bit of help, to find out if it was our parenting or not. Although, we were pretty sure our parenting was ok as Kyla was no problem at all and both were parented the same. We were called through by the ADHD Specialist Nurse, and again we discussed Jake and then went through the Connors Test Results. We were pretty shocked when she told us that the results showed he was actually Severe ADHD, as we had thought that if there was ADHD then it could only be mild. I remember feeling sad but also like a weight had been lifted off my shoulders. That finally there was a reason behind the way he was and we can hopefully get help for that!

We saw his Consultant the following month where Jake was given his diagnosis of ADHD, ODD with Traits of Hight Functioning Asperger Syndrome. We were told that he was too young to get the diagnosis of Asperger, but there are traits there. We discussed options and things we can do to help him. We learnt to pick up on his ticks and things that made him snap. We had regular follow up appointments with the ADHD Nurse, and were told to see his Consultant again in a year’s time. One year later we were back in the Consulting Room – discussing which medications to put our child on……

3 Comments

I agree, it is not helpful at all to label a child. The only benefit of a diagnosis is if somebody is going to do something about it and not use it as an explanation. A diagnosis is not an explanation, but a way to describe a collection of symptoms. I hope that you receive lots of support and helpful advice in the next few months/years. A dietary protocol for ASD is far more complex than removing e numbers and I would recommend you look into things like the GAPs diet and seek support from a functional medicine practitioner such as myself in your area. Best wishes.

Hi read yr story about yr wee boy me and my partner are going through the same thing with our 6 year old son. We have been referred to different speacilist and still no further on. The only difference is our son was meeting his miletones and i was just being told i was a over concerned mum we are hoping to get anwers late this month as they think he has depraxia were it affects his overall development could you keep me updated with yr story please

Hi Carrie, Sorry to hear that you are not getting any answers at the moment. I hope that they come soon. I think a lot of health professionals are quick to tell mum’s that they are overreacting. We certainly were told the same – and it took 18mths to-and-fro before we got referred. I hope you get some answers soon!